Smoke Smell

[tripete]

Over the last few months I have been smelling smoke when there is none. I had assumed it was my ceiling fan or coffee pot as we have no smokers in our home. I have eliminated all those things and the smell has gotten worse and worse to the point that it feels like it will gag me at times. It is constant now.

Is this related to ALS? I have Googled it and know that there is a phenomenon called parosmia that can be related to neurological issues but found nothing specific to ALS.

Any thoughts?

 

[KarenNWendyn]

Not sure if/ how this relates to ALS, but some questions:
1. Does anyone else smell this when you do?
2. Do you smell this only in certain areas of your house, or can you smell it other places as well, including outdoors?
3. Is it present all the time or just intermittently?
4. Do you have headaches, see flashing lights, or experience any other unusual symptoms with the smell, or shortly after?

 

[Firefighter58]

Hi there tripete
What type of area do you live in? Where I live we smell smoke very often at this time of year from the neighbors fire place, or some of them have outdoor fireplaces, they all smell the same. Like Karen says have a friend in and see if they smell it inside and out.
Always make sure you have at least two working smoke detectors.
Al

 

[tripete]

1) no one else smells it
2) i smell it every where
3) it started out intermittent (a month or two ago) and in the last few days has become constant
4) i have had headaches since diagnosis was told it is co2 build up, no lights etc..

also I did have CT and MRI in Oct 2014 prior to diagnosis

 

[KarenNWendyn]

I would make sure someone checks over the pwc thoroughly to make sure the smell is not coming from it.
I can't think of how the smell would be related to ALS. Sometimes temporal lobe processes such as seizures or migraines can be associated with smelling odd smells including a burning smell, but I'd expect that to be intermittent. I recommend talking to your neurologist unless anyone here has other suggestions.

 

[KarenNWendyn]

One other thing I forgot to mention --- did you start any new meds or supplements right before you first noticed this problem? If so, you might want to experiment by not taking anything you recently started to see if that makes a difference. Some medications can alter sense of taste and this can affect smell.

 

[lgelb]

A BiPAP system can develop a sweet and/or smoky smell. Sniffing the interior of the hose without the mask, and the humidifier chamber as well, could confirm that as the source.

 

[pittsburghgal]

My husband, Frank, has had changes in his sense of smell over the past 2 years. He has a more acute sense of smell than he ever had before but he also seems to smell things that no one else can. He often complains that he smells a foul odor from his trach (he describes it "like a dead mouse") but neither I nor the pulmonologist or ENT doctor can smell anything.

I make a lentil soup that he used to love when he could eat and the last time I made it, he said that the smell was awful to him and was making him nauseous.

Sharon

 

[ShiftKicker]

There has been mention of this in the past here. Someone was complaining of a perfume smell that no one else detected.

 

[tripete]

It is there even when I am not using my power chair, like in bed at night.

Also I do not take any medications.

Maybe the trilogy but it happens when I am not wearing it also (I go about 4 hours a day without it).

I do remember the perfume post. Not sure if it is related.

I did ask my ALS nurse but have not heard back.

I will keep you posted if I hear anything or figure it out.

 

[affected]

Many PALS have reported hypersensitive sense of smell, changes in how things smell to them (what was once a good smell becomes nauseating), and smelling things as something different.

I've never heard why, but it's reasonable common - sucks tho!

 

[KimT]

I have a hypersensitive sense of smell. I had it years before ALS but, when I'm not feeling well, it gets much worse. I went to a church service last week and had to leave because the church smelled moldy. Nobody else could smell it but, on further investigation, the church suffered hurricane damage from water so that was it.

When I walk past someone I can tell if they're a tobacco smoker, weed smoker, or wearing any type of fragrance including shampoo.

Pete, you just might have developed what I've had for years. I call it a toxic load. When it gets too high, I get a migraine or I'm extremely tired. I'm not allergic to any food but eating certain foods (fermented) seems to make it worse.

 

[Smith2026]

wow....talk about strange, my dad who has ALS, was talking about smelling diesel the other day

 

[tripete]

My ALS nurse replied to me: "I have never had this associated with any of our ALS patients. I really don't have an answer for this." That was it. No I will talk with the doctor nothing.

I feel like they just have no clue at the Philadelphia ALS Association. And at my last appointment when my "numbers" were so low it feels like they have "washed" their hands of the "rolling dead guy" who refuses to take meds.

 

[chally]

Hey Pete, I have noticed my smelling has become more sensitive last year or so.
I try to fist bump or elbow bump but people still catch me off guard and come in for full body hug and me in pwc means all over my head.
When this happens I can't get their smell off me and sometimes have to change shirts.
Cooler weather here in WV means wood stove Heat are cranking up and I smell smoke every where.
Hope ya find the source let us know. How can this not be ALS . My whole sinus and nasal passage is changed
Chally